I Want to Talk About Me

I’ve written a lot about trying to get friends and family to understand even a tidbit of what its like to live with MS. Another thing I’ve written about is the importance of finding a good support system. Today though, I want to focus on one-sided friendships. I don’t talk a lot about my health to anyone but my husband and my mom. I know what I have, and I’ve accepted it, so I don’t see the point of complaining and sharing my worries and concerns with everyone else, even my close friends. Sometimes though, I wish I did.

One-sided friendships

I have some friendships where I feel that I pour my all. When they need to talk, vent, cry, whatever, I’m their loyal shoulder to cry on. Even when I’m having a flat out terrible MS day, you can count on me being all ears. However, often it seems that these friends are so caught up in their personal problems (that honestly seem so small), that they forget that I have my own mountains I face daily. Like MS. I understand everyone has their tough days and their issues, but please don’t complain to me about how hard your day was hauling your kids all over town and how exhausted that’s made you. And no, I don’t want to hear about how sore you are from your workout. I know that these friends know about my disease. I know that they know I juggle a toddler with MS, so to hear them complain to me about things like that, kind of makes me want to punch them in the teeth. I’m only partly just kidding. But, come on!

Acknowledging an illness that is a major part of my life

Oh, and after their senseless complaining, they can’t even stop to ask how I am…don’t even get me started. All I can think when things like this happen is: maybe if I complained more then they could see how difficult, painful and exhausting some days are. Perhaps they would be more empathetic and thoughtful about the things they choose to complain about. It hurts to know everything I go through day in and day out and for that not to be acknowledged. Heck, sometimes it would be nice for them to take a breath from complaining about their life for a second and ask me how I am. I might even lie and say I’m fine, but at least I’ll know that they understand that I have an illness that’s a MAJOR part of my life. I’ll know they understand I have a lot of bad days and sometimes I need to vent and complain, too.

Shedding light on how tough MS is

I don’t feel sorry for myself often, and I wouldn’t say I necessarily feel sorry for myself in these instances, but I do want to feel like my friends care about my life, too, and that they’re sensitive to what life with MS entails. I do want my friends to do research on MS, and see what it might be like. I don’t expect them to understand, but I feel like sometimes we need to shed more light on how tough MS is. Maybe, just maybe, those like me who hold it all in should complain a little bit more. We don’t even have to complain, just be honest.

Wanting to feel heard

I know I’m to blame for a lot of this. I don’t complain much. And, more times than not I’m not honest when it comes to how I’m feeling, because it’s too exhausting to try and explain. However, one thing having MS has taught me is that just because someone doesn’t look or even act sick, that doesn’t mean they aren’t fighting. That doesn’t mean they aren’t sick or hurting. That doesn’t mean they haven’t had a lot of bad days that week and may need to know someone is thinking about them. I love my friends; I have so many that are wonderful and supportive, but I do have those who forget to focus on anyone but themselves. And that’s hard no matter who you are! I thoroughly enjoy being a friend. I love listening to others and letting them know they’re heard and cared for, but every once in a blue moon, I like for that feeling to be reciprocated. I want to know that I can talk about me, too.

Does anyone else feel this way with their friendships? Is anyone else exhausted trying to care and listen to everyone else and not feel heard yourself? I know I can’t be the only one.

XOXO,

Calie

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I hear you, @shellrb. I understand that must have been very painful, and I appreciate you sharing your experience here. Unfortunately, many here have had similar experiences – which means you are not alone. I thought you might be interested in this article from one of our advocates about the affects of MS on friendships: https://multiplesclerosis.net/living-with-ms/ms-turns-friends-strangers-strangers-friends/ Thank you again for reaching out and for being a part of our community. Best, Shelby, MultipleSclerosis.net Team Member

Oh I can relate…always there to listen and lend support and its rarely reciprocated. I actually become uncomfortable when someone actually does hear and listen to my struggle. I need to be more caring and listen to myself and not try to be wonder woman all the time…

Mascha,
I hear your pain when talking about your husband being evasive at times when you talk. This hurts more when you are not given the time or attention to talk about what hurts you.
I don’t think it is as much that your husband doesn’t care as more of a deep frustration that your husband can’t fully understand how he can help you. Men are quite naturally the person who wants to fix the problem and if he feels he can’t fix this. You will lose his attention. This is why I find that websites such as this give sufferers a platform to express themselves where they won’t be ignored or left feeling like they wished they hadn’t opened their mouths.
It hurts to be ignored. It hurts not to be validated, or understood. Not everyone is going to be there for us. And it hurts. Articles like this one bring home how devastating life can be on a daily basis and life hurts. It takes away one’s joy. Life is often not fair and we wonder when life will get better for us. But for many life doesn’t get better and all we can do is rant and rave here to get it off our chest and feel heard because we are all in the same boat. thank you for this website.

Thank you Dory, I missed my notifications again? Only I had seen it a week ago as I was feeling quite down. It’s so true what you say.
I feel I shouldn’t complain because he does everything for me. He does all the accounts and things that need to be done, he’s been cooking for me now since 2 yrs. I try to do the housework and groceries as I used to when I was a stay at home mum. I can still manage but now have noticed since been away from home and not doing housework I have less paint. I probably did 2 hrs to 3 every day as it gets so dusty. I am lucky that I can still pretty much stay active but not over do it.
Complaining makes me feel bad beyhe is there for me besides the conversation of MS now. At the beginning it was not a problem and must say it was too much and now the slightest comment or remark is a No. I told him I’m trying to say nothing about my MS. He said well it’s not working. I don’t talk about it all day and don’t complain but will throw bits and pieces here and there. Especially when trying a new medication then I will talk his ear off, because they are causing side effects.
The worst was when he had friends over. My husband told them “ her memory is not good because of MS. I wanted to reply with a joke and my solution and got cut off by them saying “ we need to get going “ now these are elderly friends that have always listened before but I’ve never spoken about it, besides a “ it’s okay.

When friends ask me how I am, I usually tell them about one symptomin some depth. It’s like a short lesson in what MS is. Eventually, they get a fuller picture of our trials. These are friends from my Torture Yoga class (only torture for me!).

I completely understand this phenomena. I found that getting MS really cleared out the fair weather friends from the true friends.

I also almost lost a very good friend because even though she knew my diagnosis, she had very little understanding of what my everyday is like. I wrote out a list for her and it completely changed everything for her and our friendship deepened.

I realized that even though everyone I know knows that I have MS and even though I tell them my symptoms, they do not comprehend what it feels like to be me on a daily basis.

Writing the list was terrifying for me. I realized that under my stoicism was a real fear that I would be rejected and abandoned if others knew how sick I really am.

I’ve since published the list on FB and that was a huge thing! I’ve been working on a talk I’ll be giving about MS in a couple of weeks and I literally cry when I practice saying, “Hi, my name is Elyn and I have MS. This is what that means for me…”

So you might have some resistance around telling others the complete truth. We look great on the outside, we’re getting things done, yet until my friends and some family members got the list, they had no idea at all. I’ve lost a lot of friends due to these misunderstandings.

What a great article:) I often feel this way. I feel invisible constantly.
I don’t have many people I can vent to, or talk about my issues besides on the MS sites. It’s not the same as in face to face.
I can’t talk to my husband either anymore. Only if it’s really needed, he’s there for me. He changes conversation or shakes his head because I happened to talk too much about my new medication at that time. It was over ruling everything. Maybe if I got his full attention to be able to talk now and again, I wouldn’t feel the need to throw out information here and there just to be heard.
I don’t think I say much about it. Definitely not in detail because I don’t get the chance. It’s almost like it’s a sin.

Thank you for commenting @maschabrautigam. I’m so sorry to hear that you don’t feel like you have the support system you need right now. I know an online community can only be there for you in so many ways, but please know that you are not alone. We are here for you anytime you need to talk or just vent – we hear you. Thank you again for taking the time to share. Best, Shelby, MultipleSclerosis.net Team Member

I love reading your articles. Most of it is so true of us MS sufferers. Every day waking up is a challenge because you don’t know what kind of day lies ahead. You are so lucky that your friends stuck with you. I had really great friends, but they pulled away. I guess nobody wants to hang around MS people because we have changed. We can’t do all the things we used to do and we aren’t any fun anymore. Of course, I think we all have days where we are sad or we are going to cry. Reading your articles makes me feel better or hopeful.